What could we do better?

[johnt]

Now, at the start of a new year, it is, perhaps, the time to ask how can we, the members of this forum, be more effective?

Effective at what? We all have our own reasons for our involvement.

Why are you a member?

For me, I suppose the main reason that I spend so much time on this forum is that, nearly 8 years after diagnosis, I'm not confident that BIG-HEALTH will make available anything to substantially further improve my condition, let alone cure me, before it's too late. (I would be confident if I were newly diagnosed.) I am confident, however, that I can benefit from the collective experience and wisdom of other members ..., but how I wish we were more effective.

I suggest we have more collective actions, more objective measurement.

How do you think we could be more effective?

John

[soccertese]

1. join PAN
http://www.parkinsonsaction.org/
the lobbying organizations are in place, they just need more support
2. urge BOB HOSKINS to be more like MJF who has done more to help pd'ers and might be giving us our first pd sitcom which will be incredible.
3. support the MJFF, they seem to be influencing both business and govts more than any other organization.
4. participate in a clinical trial even if it's just data collection. even if we had a better way of doing research and more money, it ain't going to matter if it takes a year or more to find enough volunteers for a trial. i know i'd personally have a tough choice volunteering for brain surgery with a 50 /50 chance of getting a sham treatment so maybe volunteers need to be paid more. i was in a clinical trial that interfered with my job and took hrs of just waiting around for the neuro to fit me into his schedule. it was with a major drug company. it cost me way more than they paid me, with the carrot being i would get the new drug for free if approved, which it wasn't.

no need to reinvent the wheel imho.

i see more trials that might have disease modifying outcomes than ever before. i was very surprised they were initiating foetal cell implants again in europe, when done in the 80's/90's it worked great in some patient, in others it didn't. a company in NZ is starting a trial implanting pig cells. i'm more under the impression that a "cure" is possible and it may result as much from basic science and genomics than from research targeted directly at pd.

that said, with pd now being seen as much more than affecting motor symptoms, i'm realistic that the "cure" will never make me 100% and it would be unfair to expect society to spend the money needed to develop research attempting to repair the whole bran.

[Thelma]

Get down to the nitty gritty


Money makes the world go round WORLD go round


Tell the world how much you suffer from Parkinsons and they say HELLO I have CANCER

Tell the WORLD you hurt and they say how would you like to have the other disease that I have or my sister does or my brother or someone I know even does

BUT


Tell them how much the world is missing in the work that those with Parkinsons can no longer do or just the potential that is being lost and then equate that with the monies coming out of their own pockets for medications insurance etc and then watch the interest that follows.

Reach them where it hurts the most......in their pocket book and let them envision the loss of the potential which in the very end effects them and their childres futures.

Get down and get dirty for the truth is not nice but the actual force of the TRUTH is effective.


Tell it like it is

[Dianna_Wood]

I come for suppport, and to hear other person's opinions. And to hopefully make some new mates along the way.

Dianna

[reverett123]

Thirteen years since DX and the medical world has done little for me. I am still able to drive most days and still able to walk most days as well. But I can see that slippage is occuring and I am aware that any disasters that come my way could be the end. That ****** me off.

I have kept a list of things that make a rational case for potential benefit. That is, things that don't require mental gymnastics to see that they just might work. That list has about 75 items on it. Things that Big Pharma can't make a buck at. Others that people who should know better turn their nose up at. So I have begun a more disciplined effort to do a sort of triage with this list. There may be something there and I may find it.

[stevem53]

I came here in 2004 looking for support, and with curiosity of what this disease was going to do to me down the road

Neuro told me not to worry..Within 5 years they will have a cure..I'm still waiting..And so are you folks who were told the same thing 20 years ago

I agree with what Rev posted, and has been posting for a long time..Basically if we dont think outside of the box, nobody in the medical community, and certainly, nobody in corporate pharma is going to do it for us

We are pharmas best dream come true..A long term illness with no cure that rakes in thousands of dollars per patient every year..Ain't no way in hell they're ever gonna give that up

Ive also about had it with all these pd organizations as well..The only people who I see reaping any benefits from their efforts, and our efforts, are the people who are employed by these organizations, with the exception of the MJF Foundation..Michael is one of us